The Jansen De Vries Syndrome Foundation Inc

Nonprofit profile at a glance

EIN
854064822
IRS 990-EZ coverage
2022–2025
Forms available
Form 990-EZ 2025
Location
Natick, MA, USA
Phone
4133643310
Rating
94
Verdict
STRONG
Rating confidence
Moderate
Sector
Alliance/Advocacy Organizations

Reported finances

Revenue
$131,193
Expenses
$116,807
Assets
$63,793
Liabilities
$15

Source: IRS Form 990-EZ. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

4 people listed

Executive titles in this filing

  • KARA KILROY (PRESIDENT/DI)

People named in this filing

  • KARA KILROY (PRESIDENT/DI)
  • RACHEL HORNE (VP/SECRETARY)
  • MARINDA DU TOIT (TREASURER)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990-EZ. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The jansen de vries syndrome foundation is committed to improving the lives of those affected by jdvs through building community, spreading awareness and supporting research.

What it reported doing in 2025

Through fundraising and grant efforts, the foundation works to provide researchers the resources necessary to gain a better understanding of the ppm1d mutation and develop potential treatments and therapies to ultimately improve the lives of those living with this rare genetic condition.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 91% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Expenses are high relative to revenue and total assets are small relative to annual expenses; liquid coverage is unknown.

Rating breakdown

  • Financial Efficiency: 93
  • Transparency & Controls: 100
  • Sustainability: 52
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 89%; rating input score 89
  • Program expense ratio: 100%; rating input score 100

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100

Sustainability

  • Operating margin: 11%; rating input score 57; 57th percentile among comparable filings
  • Total-asset coverage ratio: 0.55; rating input score 40; 40th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 47; 47th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings

Growth

  • Program expense growth: 53.5% per year; rating input score 100; 92nd percentile among comparable filings
  • Revenue growth: 33.5% per year; rating input score 100; 91st percentile among comparable filings
  • Asset growth: 5.3% per year; rating input score 100; 44th percentile among comparable filings

Details

  • Where the money goes: 89% of revenue deployed · 100% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 1 filed program accomplishment · $117K in reported program spending
  • Leadership: top reported pay $0 · 4 people listed
  • Consistency: 8 of 8 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 4 filing years from 2022 to 2025
  • Contacts: How to reach this organization
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Review — Sustainability: Operating margin scored 57/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 40/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 47/100.